Axel Kaehne

Focus groups with people with learning disabilities

Focus groups are a widely accepted method in qualitative research. While there is a burgeoning literature on the methodology of focus groups, using focus groups with people with learning disabilities has received less attention so far. The article serves two purposes: (1) to review the current literature on focus groups in learning disability research and (2) to sketch four aspects that may impact on the usefulness of the focus group method with respondents with learning disabilities. Some comments on the role of focus groups in qualitative research start the article before we outline the emancipatory and participatory context of research with people with learning disabilities.

Person-Centred Reviews as a Mechanism for Planning the Post-School Transition of Young People with Intellectual Disability.

BACKGROUND Person-centred planning has played a key role in the transformation of intellectual disabilities services for more than a decade. The literature has identified clear advantages for service users when service delivery is planned around the individual rather than the user is made to fit into service structures. Researchers however have pointed out that there is a lack of evidence that person-centred planning positively influences outcomes for users. METHOD Our study examined the application of person-centred planning during transition for young people with intellectual disabilities. We investigated the nature and content of 44 person-centred reviews of transition planning for this population in a local authority in the UK. We carried out a documentary analysis of all person-centred plans and conducted telephone interviews with all families participating in the programme. We focused on the issue of attendance at review meetings and what was discussed during the meetings. RESULTS Analysis of the data shows an increase in the participation of young people and carers at review meetings and a significant shift in topics discussed during the transition planning process compared with previous programmes. However, some of these effects may dissipate once young people are actually leaving school as planning well is not synonymous with having an improved range of placement options. CONCLUSIONS The findings suggest that person-centred planning can impact positively on some aspects of transition planning, while it may be too optimistic to expect radical improvement in other area. Key to further improvements is to complement person-centred planning with consistent involvement of all relevant stakeholders in planning for individuals.

Choice for young people with learning disabilities in post-education transition

Governmental policy identifies choice as a central theme for support services to people with learning disabilities. The expansion of options about where to live, what to do and with whom to socialise is seen as a critical benchmark in achieving the vision of full lives for people with learning disabilities. Services are obligated to ensure that peoples wants as well as abilities govern decisions on all important issues. As a consequence, young people with learning disabilities in transition are being offered career development options during transition review meetings. The paper will focus on the issues relating to choice during this post‐education transition.The paper will argue that the processes necessary to sustain the capacity of the young person with learning disabilities to choose are not well understood. It will focus on the career choices for young people with learning disabilities during transition and will maintain that the availability of options is only one consideration. The capacity to choose and the types of support that are most effective in facilitating the capacity to choose are equally important. Some conceptual considerations will assist in identifying the shortcomings of current policy and practice.

Partnerships in Local Government: The case of transition support services for young people with learning disabilities

Abstract This paper examines a type of partnership that is formed to deliver transition support services for young people with learning disabilities. What makes transition partnerships instructive for partnership research is that they are constituted between statutory and non-statutory agencies across a wide range of service sectors. Transition for this population group with its specific needs has often been described as a ‘wicked problem’. The paper suggests that a split between strategic and operational levels of partnership work adversely affects policy implementation and contributes to the inability of stakeholders to bring about improved outcomes for service users.

User involvement in service integration and carers' views of co-locating children's services

PURPOSE There has been considerable discussion about the benefits of health and social care integration over the last decade but less research on the purpose and effectiveness of carer and user involvement in service changes and service evaluation. The paper aims to report the findings of a study of two learning disabilities services in Wales that undertook co-location in a children development centre. DESIGN/METHODOLOGY/APPROACH The study investigated whether carers of children with learning disabilities had any knowledge of organisational changes that occurred as a result of co-locating services. The study used a mixed method approach. The authors conducted semi-structured interviews with all parental representatives on the service planning groups and then asked local staff to facilitate a survey to parents of children with learning disabilities in their area. FINDINGS Carers in both locations were mainly unaware of any changes, unless they were personally involved in service changes through advocacy or parental support groups. Carer responses mainly reflected national debates, such as service cuts, rather than the local context. Whilst there was significant support for co-location in general, parental views differed considerably on the merits of service changes depending on the needs of their own child. ORIGINALITY/VALUE These results caution against assuming a simple pathway from parental views of local services to defining service needs to plan new services. The authors argue that parents lack sufficient knowledge of organisational changes to make an informed decision on whether these changes would bring about service improvements. Implications for research and professional practice are spelled out.

Supported Employment for Young People with Intellectual Disabilities Facilitated through Peer Support: A Pilot Study.

The article reports the evaluation of a small-scale–supported employment project in a local authority in England. The study examined whether or not the peer support model could be used to deliver supported employment to a group of young people with intellectual disabilities. We utilised a mixed-method approach involving activity data, family interviews and a postal survey with participating employers. Five families took part in the study. Our findings show that families viewed the project positively, although it was insufficiently embedded in the wider transition planning. The study indicates that the peer support model may represent a useful addition to the conventional supported employment efforts for this population. However, more research is needed to demonstrate the benefits of peer support over and above the benefits of conventional supported employment for young people in post-school transition. In particular, producing a better evidence base on the exact impact of peer support on service users’ experiences is recommended.

Complexity in programme evaluations and integration studies: what can it tell us?

Purpose Complexity received increasing attention from researchers in integration and evaluation studies. Complex adaptive systems are the most prominent formulation of complexity used in programme evaluations. However, there remain significant theoretical and conceptual barriers to using complexity as an explanatory model in social sciences, and thus in applying it successfully in integration and evaluation studies. The paper aims to discuss these issues. Design/methodology/approach Discussion paper outlining the potential uses and risks of complexity theory for studying integration programmes in health and social care and programme evaluations in general. The paper proceeds by synthesising the work of various critics and proponents of complexity theory in the social sciences and evaluation theory. Findings Complexity offers opportunities and risks to social scientists working in programme evaluations and integration studies. The opportunities are defined by additional modelling and verification/falsification of possible cause and effect links in programme settings. The risks, on the other hand, are twofold. Social scientists may use complexity as a shorthand for as yet insufficient understanding of the contexts under examination, or they mistake it for an explanatory device without testing its potential to explain. The second risk emerges as a result of the nature of complexity and its role in natural sciences. Assigning complexity an explanatory role may prevent further investigation of a given setting that may reveal that complexity is insufficient to understand what is going on. Originality/value Researchers should make clear how they have operationalised and measured the various features of the complexity model to allow robust verification of the evidence. Scholars should also assume that complexity as defined by the natural sciences is philosophically and epistemologically problematic when transferred into the realm of social sciences that largely operate with concepts informed by the paradigm of understanding social behaviour.

Head-to-head trials of antibiotics for non-cystic fibrosis bronchiectasis

This is a protocol for a Cochrane Review (Intervention). The objectives are as follows: To evaluate the comparative effects of different antibiotics in the treatment of adults and children with non-cystic fibrosis bronchiectasis.

Do public consultations work? The case of the Social Services and Well-being (Wales) Bill

Conducting a public consultation is a popular way to draw on wider expertise in framing legislation in the UK. In Wales, low scrutinising capacity of a relatively small legislative chamber and limited civil service resources to prepare legislation may contribute to the popularity of consultations. Public consultations may also resonate with themes of inclusion and participation in Welsh governance. The Social Services and Well-being (Wales) Bill was the first large legislative project of the Welsh Government since gaining primary law making powers in 2011. This case study investigated the public consultation (conducted at Stage 1) for this bill in 2013. It used a coding matrix to analyse the submissions to the consultation. The findings reveal that individuals and organisations may struggle to effectively influence legislation. Using van Damme and Brans’ interpretative framework, the article locates the findings within the context of citizen participation, consultation techniques and discusses the usefulness of analysing submissions as part of consultation evaluations. In addition, the article makes a case for triangulating a documentary analysis of submissions with conventional qualitative evidence in future consultation research.

Multi-agency Protocols as a Mechanism to Improve Partnerships in Public Services

Abstract Partnerships in public service delivery have received attention from researchers and policy-makers since the late 1990s. However, there has been less research on one critical mechanism to aide partnership processes: multi-agency protocols. The study investigated the role of protocols in the creation of multi-agency partnerships in transition support services for young people with intellectual disabilities. We found that protocols can clarify roles for multi-agency partnerships and may assist in clearly allocating tasks and responsibilities to individual agencies. They can be useful for services insofar as they identify clear procedures and practices for each organisation. Early involvement in protocol formulation may, for example, lead to better working knowledge of protocol contents amongst staff. However, in our case, respondents were disappointed that formulating and implementing partnership protocols failed to overcome entrenched professional divisions, or to address the exclusion of some important stakeholders.